Ish, Ani & Air

Last week has been one hell of a roller coaster ride for us.

The first half of the week was fun-filled. We went to Lombok for a family (plus girlfriends) vacation. Afif had so much fun swimming in the pool, discovering waterfall, playing with the sand and being chased by the waves at the beach. Everything was smooth-sailing. 

 Playing with sand and attempting to build sandcastle

Us at Sendang Gile Waterfall, Lombok

Until we board the flight home to KL.

He had a major diarrhea. We had to change his diaper twice on the plane and once at the airport. Later that night, the diarrhea didn't subside. He developed a high fever. The next morning, he's still sick. We brought him to the hospital and he was warded for 3 days. He was tested positive of rotavirus. (T_T)

It was challenging for me; being pregnant, having morning sickness and looking after a sick, whiny child who needs to go to the bathroom 10 times a day. i couldn't imagine how painful and tired he feels. My poor baby..

Tapi setiap kejadian, ada hikmahnya. Hari kedua kat hospital, Afif tengah tengok Barney and Friends kat iPad. Tetiba dia kata dengan excitednya "Aaniii!!". Pastu everytime bebudak dalam Barney tu jerit "Barney!", Afif pon akan kata "Aani!!"

Kat hospital jugak, dia belajar sebut "Fish". i showed him videos with fist in it, drew fishes for him.. Lama-lama, nampak je ikan, dia akan sebut "ish!"

As he needed to drink a lot to keep him hydrated during his diarrhea episode, i always made Ribena for him. Sambil buat air Ribena tu, mama akan cakap "Afif nak air? Mama buat air.. Air sedap.. Ok, nah air.. Minom air.." Lama-lama, dia reti sebut air. Bila nak mintak, dia akan tunjuk sippy cup and i'd say "Air. nak air?" dan dia akan cakap "Air.."

Kali ni, sakit ada hikmah untuk Afif. He learnt to pronounce not only one, but 3 meaningful words. The pronouncation might not be perfect but he'll get there. 

Mama and daddy are so proud of you, baby! We've got a feeling that you'll be blurting words after words from now on.

;)

House Visit by Dr. Basha

Last Saturday we had the pleasure of having Dr. Basha visiting us at home. Dr. Basha is Afif's speech therapist from TUTUR, Klinik Audiology UKM.

Objective of the visit is to see how Afif is at home. Where he always hangs out at? What he does at home? What are the toys he plays with? How do we, as parents, interact and communicate with him? Things like that. After making the observation she would sit us down and discuss what she sees and comments on what to improve.

She came at around 11.30am. Afif malu-malu pulak salam dia. After having a drink, we straight away went to Afif's playroom. Upon entering the playroom, Dr. Basha said "Wahh dah macam therapy room!" Hehe.

Afif pon buat la apa dia selalu buat. Main conteng-conteng buku. Dia suka bila Mama pegang tangan dia and lukis beruang sambil nyanyi lagu "Anak Beruang". Upon seeing this, Dr. Basha suggest pausing at some parts of the sound to encourage him to continue singing or asking me to continue singing.

Lepas tu main masak-masak. Main bola. Conteng dinding. Ada jugak time yang dia takmo main dah. Sibuk nak turun. So we took 5 minutes off and doktor suggests what to do with some toys.

After we're done playing, ajak Dr. Basha makan. Senang hati tengok dia selera betol makan. Lauk kampung je pon. Of course la bukan aku masak dah aku sibuk main ngan Afif. Baahaha.

She said my skill of interacting with Afif is good and she has no comment on that. Cuma kene banyak ulang-ulang supaya lekat dalam kepala Afif. Idzwan has to improve and needs to talk more to Afif. The key with interacting with a deaf child is to make everything fun. Bila fun, diorang automatic akan nak main dan nak belajar.

Dia jugak suruh kitorang gunakan laman rumah yang luas tu. Bercucuk tanam atau menebas, ajak Afif. Siram bunga ajak Afif. Aku gelak je sebab kitorang memang lah bukan gardener hoih. Tapi akan cuba lepas ni.

Aku suka betul ngan Dr. Basha ni. She is the kind of doctor whose involvement with her patients is not limited to working hours. Email aku tak pernah tak balas. Weekend ada je dia buat playgroup for certain group of children. Weekend jugak dia buat house visit kepada sesiapa yang dia rasa memerlukan. Doctors like her really make a difference. Whether she knows it or not.

Thanks doctor, for your time and patience. 

Audiograms: August 2014

Last two weeks we went for unaided audiogram at Klinik Audiologi UKM. Ntah kenapa hari tu Afif takut dengan puppet berlampu tu (kene respon pandang ke puppet bila dia dengar bunyi. Itu untuk menunjukkan yang dia dengar). Dia menangis dan berpeluk je masa mula-mula start test. We ended up not using the puppet, just let him draw (more like menconteng) to distract him and observe his change of facial expression/movement bila bagi dengar sound.

What's worrying is that his hearing loss seems to be progressive at the high frequency. Meaning his hearing is worse that the last time we had an unaided test.

Afif unaided test Aug 14, 2014.

i argued with Pn. Izzati about the accuracy of the test because Afif listens well and while his speech progress is not much, it does not seem to worsen. He can even pronounce shh/ (which is a high frequency sound). Pn. Izzati kata dia ulang banyak kali bunyi kat high frequency tu tapi Afif still tak respon. Lagi la mama risau :'(

We discussed about possibility of cochlea implant for Afif. Beacuse if his hearing loss is really progressive, i want to insist on him having a CI. i don't want to risk waiting and delaying him to learn to speak. Pn. Izzati suggested to run one more aided test. With both aided and unaided test, she can bring forward Afif's name in the next CI meeting.

So last week we went for another aided audiogram.

Alhamdulillah, this time he was not scared of the puppet anymore. And the more good news is, Afif's aided hearing threshold has improved from last aided test in June.

Afif aided test Aug 19, 2014.

Though relieved at this result, i'm still in doubt. Because after 8 months of consistently wearing hearing aids, and looking at the good aided hearing threshold, Afif's meaningful words are limited to Mama, meow and hai. Nothing more. 

Yes, he had produced more sounds like shh/, na/ di/ ge/ but no other meaningful words. Maybe there are certain speech sounds that he can't hear or maybe it's our teaching technique that is wrong.

At the last discussion with ENT, audiologist and speech therapist, they all agreed that Afif is progressing okay. But as a mom, i'm still worried. i'm still not satisfied.

As of today, we have decided to seek second opinion from experts from other hospitals. We feel that after hearing opinions from others, we'll be more comfortable in making decision; to continue with HA or to go for CI. At the same time, we're learning more and more to be a better speech therapist for him.

Being parents of deaf child really is exhausting. It's not the dealing with your deaf child that is exhausting; it's the pressure of making the right choice for him that is exhausting. We want the best for him but we don't know what the best is.

O' Allah. Ease our journey to make the right choice. Ease Afif's path so that he can hear and speak beautifully. Please give him the ability to hear and speak and the opportunity to learn, be accepted and have a bright future like other normal children. Amin.

Pregnancy and Labor

Just like any other couple, Idzwan and i are two people in love. 5 years in relationship and we decided to get married.

Two months into marriage, we found out that i'm pregnant. As new parents, the usual mix of emotions were there. Happy, confused, ecstatic, anxious, excited.. All at the same time. i went through rounds of morning day and night sickness. Nothing i can't handle.

Viral Fever

At 8 weeks of pregnancy, i got a high fever with rashes all over my body and was hospitalized for 4 days. Turned out it was viral fever. The entire time, all i can think of was my baby. Please let my baby be okay. Please let my baby live. Please let my baby survive. Please, no harm on my baby. Ultrasound shows that my baby is very much alive and kicking. The obstretician assured me that the baby is okay. Not to worry. It was a relief.

Thankfully the rest of 7 months of pregnancy went smoothly. Monthly ultrasound scan and bloodworks show that my baby is thriving and healthy.

Labor Story

Week 36 of pregnancy, i was bleeding. Was taken to the labor room and it is found that i'm having irregular contraction. i truly thought i was going to deliver my baby boy on that day. i was given two steroid shots to mature the baby's lungs as the baby is not full term. After 3 days of hospitalization and being observed, i was sent home. Baby is not ready to come out yet.

At 37 weeks, my water broke at 3am. At 10am, i am still 2cm dialated and baby's heart beat began to decrease. Doctor decided we can not wait any longer and i had an emergency c-section. It turned out that the umbilical cord was short, making the baby unable to descend.

Afif Haiqal was born on 11 October 2012. Truly one of the happiest moments in our life.

Now, the reason i share Afif's birth story is to see if there's a connection between my pragnancy/labor with his hearing loss. 

The doctors suspect that the  viral fever that i had at 2 months pregnancy is the culprit. At 2 months, baby's organs are developing. An infection at that time could interrupt the process. If that's the case, we're thankful it's only his ears that are not properly developed. It could've been something more serious like his brain or heart.

Or it could've been during birth itself. As i mentioned, the umbilical cord was so short that it almost broke. The lack of oxygen supply could've been another reason to his deafness. 

Anyway these are just my theories.

Introduction

Assalammua'laikum and Hello!

This blog is dedicated to our firstborn son, Afif Haiqal.

Afif was born on a bright Wednesday morning (on 11th October 2012 to be exact) via Ceasarean section after a dramatic false alarm. He entered this world screaming and ready to pounce.

On his third day on Earth, he failed his newborn hearing test. We were told not to worry as it is normal for C-sect babies to fail his/her newborn hearing test as the amniotic fluid tend to still be in his/her ears and nose long after birth. The ears will be ok after a few months, they said. So we did not think much about it.

At around one month old, he failed the test again.

And again.

And again..

We came back for a few more test. ABR, sedated ABR, tympanometry..

All tests and check-ups bore the same result; our son has moderate to severe hearing loss.

As parents with normal hearing with no family history of anyone being born deaf, we were taken aback.
Puzzled.
Confused.
Sad.
Mad.

Why is this happening to our perfect baby?

Why our baby?

We were in denial.

He babbles and coo a lot. He talked back when we talk to him. He CAN NOT be deaf.

We went months trying to prove the test results wrong.

We went to seek second opinion at another hospital.

Still the same result. Afif has moderate-severe hearing loss.

And we can't prove the test results wrong either.

He would not respond to me calling him from behind. He would not flinch at the sound of thunder.

Though hard, we finally accepted that our son is hearing impaired.

Not deaf, just hard of hearing.

At 9 months, he got his hearing aids.

And thankfully (Alhamdulillah) he began to show hearing behavior.

That's why this blog exist.

This blog is dedicated to Afif Haiqal. So that one day he'll be able to re-live the journey, know the effort, the path we chose, the things that we do for him, with him.

So that he knows, he is perfect in his imperfection.

i also hope this blog will be a companion for parents of deaf or hard of hearing children. All the wikis and medical websites can give you information, but i find that reading other parents' experience more of a help. i hope this blog is good enough to be a reference for you.

Please know that you're not alone.

Our children will be okay.

Because Afif is Special

i've been wanting to blog about this for a while. But i couldn't find the mood to. Or i simply wasn't ready. So here goes..

The Beginning..

When Afif was 3 days young, he had a Newborn Hearing Test. This test is compulsory for babies born in Prince Court Medical Centre (PCMC). The result showed that he has mild hearing loss in both ears. The audiologist told us not to worry coz some babies have that kind of result. Especially babies like Afif who were born borderline premature, kinda low birth weight and through c-section. Maybe some fluids are still in his system, so that's why the hearing results were like that. i was so glad. So we didn't think too much about it.

About a month after that, we had the same test. Still negative. A few trips to the PCMC audiologist after that gave the same results. The audiologist said he can hear loud noises and high frequency sounds. But normal, conversational voice, dia dengar sayup-sayup, tenggelam timbul. He'll have problem to speak because he can't hear voices clearly.

i, of course was shocked, sad and worried. What confused us is that he laughs, responds and talks back when we talk to him or when he's watching tv. When we call him, he responds. What is that?

My husband and grandma was all "Don't think about it too much. He's still little. His ears are okay and he'll hear fine.." We're basically in denial.

Acceptance

One day, it was raining outside with loud thunders. A few times, i jumped out of my skin coz of the loud noise. But my baby, went on playing and slept soundly as if it was normal. Like he did not hear all the noise. Another day, he was watching the tv and i came from behind him. Calling his name aloud. A few times. No response. He just watched the tv. Like he couldn't hear me call.

These are the two turning points. The events that snap me out of denial. Though hard, i accepted that my son has a hearing problem.

We went to get him further tested. This time we went to Kuching General Hospital for second opinion. Why Kuching? Because my parents in law live there and my father in law works in that hospital. The test gave same result; my son has mild to moderate hearing loss in both ears.

The Cause

To all the doctors and audiologists we asked the same questions; why Afif has this hearing loss when we, his parents, have normal hearing? We don't even have family members with hearing loss. 

They say in 1000 births, 1-2 babies are born with hearing loss. Afif is one of those babies.

Digging back into my medical history, they all have the same answer; they expect the fever that i had when i was 2 month pregnant was the cause. If you read this post that i wrote, i had a viral fever (which i thought was dengue) when i was 2 month pregnant. My temperature was 40degree Celcius that time with rashes all over my body. That time, the doctor even said i could lose my baby. But i was thankful my baby was ok and i gave birth 7 months later. i never thought he would have this kind of problem.

A fever or illness at early stage of pregnancy puts the baby at risk because at this stage, all major organs are developing. i guess Afif's hearing organs were developing when i had that fever. Maybe the development somehow were stopped.

The audiologist said that Afif's eardrum, cochlear, middle ear most of the ear anatomy are functioning okay. The problem is the nerves did not develop normally. The nerve can not transfer sounds from the ear to the brain. i don't really understand that. Will need to ask more.

i'm just thankful it's just his hearing. At least his heart and brain are functioning okay.

Moving On..

The audiologists said we're lucky that we detected his hearing loss early. This way, he could wear the hearing aids early in life and he could hear and learn to talk like normal babies. In most cases, hearing loss is detected when the child is 3-4 years old because the parents noticed that he/she couldn't speak. By that time, it's too late and it'll take more effort to teach the child about sound and to get the child to speak properly.

We bought his hearing aids (HA) when he was about 9 months old. So far he hates it. You know how babies hate to wear hats, hairclips, glasses, etc on their body. Same goes with hearing aids. He yanks them out all the time. When he wears them, we have to keep his hands busy or get him distracted so that he forgets about the hearing aids. 

So far, we're doing a bad job. He wears the HA mostly at home on weekends for 2-5 hours. On weekdays, he only puts it on for maximum of 1.5 hours coz he spends the day at the babysitter's. Itu pon kadang-kadang je bukan hari-hari sebab kadang malam dia ngantok la ape la.. At first we're not advised to let him wear the HA at the babysitter's coz of loud noise (banyak budak kat situ). In the last 6 weeks we have let him wear the HA at the babysitter's. They said he still yanks the HA out all the time. Sigh.

We have been seeing the audiologist at Pusat Audiology HUKM for follow up. The problem now is Afif hates the HA. We (husband, the audiologists and i) don't know if he hates it because it's not comfortable or is it because the tune and sound of the HA is too loud for him. Dah dua session kitorang buat test just to get the most accurate result tapi tak dapat, sebab Afif takleh duk diam. Ye lah budak tengah lasak, tatih la main la cranky lah dia.

i expect him to have delay in speech. Lambat la kot baru bercakap. Sekarang ajar dia sebut basic things like ball, mama, nak, daddy.. Dia dengar je tapi tak sebut pon.

i hate myself for not trying hard enough to help Afif. He really has to wear the HA full time when he's awake but so far when he's with me, he only wears it 3 hours maximum because he hates it. Kat rumah babysitter lagi lah kejap dia pakai agaknya. i really hate myself for not doing good enough.

That's Afif's story. Maybe there'll be a different blog on his hearing journey to share our experience and to help parents out there who has similar experience. i'm telling you, people in Malaysia are not exposed to this. It's hard for us to find a support group or people with similar experience so we feel so alone.

Please pray that my son will live a normal life. My biggest fear is for him to be treated differently by people, for him bullied at school/work or for him to grow up with low self esteem. If i could, i'd gladly donate my ears to him so that he could be normal. But there's no such thing. Sigh.

i still am in a bit of a haze with all this hearing issues. Some days i refuse to acknowledge it. Some days i cry. It is not easy.

Playtime! 

 Penat la, mama..

Out and about.

Whatever it is, we'll keep on fighting with him. For him.